Hang In There!
 

Dear Laura, please know you have so many people here on your side, hoping and praying you get better. My heart goes out to you...and I am feeling the pain of your frustration.
I'm trying to think of what might be affecting your platelets so quickly...Have you been putting anything different into your body? Many foods, alcohol, supplements, and medications can lower platelets. Have you tried to google a list to see if there's anything you are doing different? You can also look on Thrombocytopenia and other low platelet support websites
Also, are you vegan? I think Vegans can only get their B12 through nutritional yeast, everyone else gets it from animal products.
Are you on probiotics? Maybe they would help your stomach absorb better if its imbalanced due to everything else..
We are here for you!! ((HUGS))

Still need to reply to some posts....made it here...but have. really bad bruising.... I was fine post trxn until a few hrs ago. Knee caps are all bruised from kneeling on ground for a few minutes...multiple other bruises...a weird rash on my legs...I watched it appear and disapear within minutes....now cheeks r firey hot to touch and bright red....something has to be going on...more later...

Wow Laura,
I'm so glad you are there now...sounds like it couldn't be a moment too soon.
Be careful and fingers crossed for some solid answers and treatment plans.

Okay!!

So very, very sorry to leave you all in suspense! But it will be well worth it :)

So to back things up...

On Monday evening I got PLTs. The post draw level was 51.

That stopped the bleeding and new bruises from forming. However, on Tuesday evening I started breaking out in bruises. I also got this rash on my legs (that went away soon after, did not itch). My cheeks then turned bright red and hot as fire. They stayed like that all night long... I decided to go to the ER here and while there the rash on my feet showed up and then went away. The nurse there was like that is weird...yeah I know.

So anyhow, they were like you totally need platelets (I look like I got beat up.) They were just about to hang them and the results came back in the 70s so they decided not to. What the heck? What is going on? The only thing I can think of is the results were wrong? Or the airplane ride? Or??? All I know is I look beat up. So they did not give the platelets. Currently, I have no new signs of bleeding so they must be okay than?? I just don't get this. My left hand is swollen with a hematoma on top. It is purple, blue, and black and hurts like crazy...not to mention everywhere else.

Anyhow...

My first apt at DF went great. This is my understanding of the plan.

Once I can stop the pain medications from a recent surgery. If able, he wants me to not take any of my current GI medications while going through the step process we have in place.

1) No lactose-down to the last detail, including none in medications. If things don't improve within 1-2 days this is not the factor.

2) Gluten free diet-He is unsure how long we should test this out before moving onto number three.

For the above two items, the theory is that GVHD can cause autoantibodies to the two above things including the low PLTS now, which is questionable.

If the above two show no improvement.

3) Pancreatic enzymes. I think the one he mentioned was Creon.

On a side note-he wants to know why I am having the issue with the B12 malabsorption. He questioned that it was not being absorbed properly in the ileum. He thinks the 1000 mcg daily is sufficient to currently treat this. This leads to number 4)

4) If not absorbing properly in the ileum not only is there malabsorption of B12 and probably other things. So this would lead to the question if the bile salts are not being absorbed, which causes bile acid diarrhea. The treatment for this is Cholestyramine.

And if none of the above bring any success...

5) Dana Farber has noticed a new condition they have yet to name. They currently call it Cord colitis. Because they have seen multiple people who received cord transplants who have similar symptoms, which are similar to mine. There really is nothing in literature yet. He said just because I didn't have cord blood doesn't mean I don't have it. He said the reason why he thinks I could have this is because my symptoms fit theirs and that Flagyl makes it better. He said they treat this with Cipro and Flagyl. It could be treatment for months to years. He said when I told him about how the Flagyl makes it better and when I stop it, it makes it worse, this totally hinted him towards this.

He also wants to do some switching up of medications...mainly getting rid of as many as possible to wipe things clean.

So that apt went great and I was so pleased!

Now to get off some of this stuff so I can get started on the plan.

He also asked if I wanted them to work up the low plts...why not? I am already here. So I had a BMB/BMA. Just waiting for results...

Thanks for everyone's kindness. Sorry if this is sloppy...I am tired...

Laura

In regards to the cheeks/rash...the thing that pops in my mind is parvovirus. Were my cheeks the distinctive butterfly rash?? And can't parvovirus cause AA? So many unanswered questions...going to try and put up a few pics...

Laura

Thanks for the update Laura.

Sounds like you're in very good hands there. I like the sounds of their plans, it seems well thought out.

About your crazy rashes...it could be Parvo, which could temporarily cause marrow suppression (and can cause AA but we won't go there), but Lupus can cause similar rashes, especially butterfly-like on the face, and there is an association with that elevated ssa/ro antibody you were speaking of earlier. I don't wish any others issues on you, obviously, but I know you like any and all ideas and I would to, that's how we nurses role ;)

Hoping those platelets keep on rising, could be the prednisone doing that.

Have a good sleep tonight, answers are on the way!

Glad to hear you are with someone who will look at all you have going on. The gut connection is soooooo important to health. People don't realize how many illnesses are tied to the health of our GI system. Many auto-immune disease have a direct correlation with GI unbalances.

Creon is the digestive enzyme used in Cystic Fibrosis patients since they are not able to secrete them.

Also, you will be amazed at how much gluten is in processed foods. You will also have to find out if your meds are gluten free. This is a tough one to do and will require some advanced meal planning.

Have they considered putting you on a prescrip probiotic? Possible the one they use for Crohns/IBS patients?

Sounds like you are good hands and it's about time!!!!! So sorry you had to go through all that you did to get someone's attention.

Oh I am SO happy to hear someone is finally taking your seriously and have a plan. I know with my transplant-related hormone/gynae issues, just having an idea of things to try is a relief in itself. It doesn't mean you'll be fixed, but at least it feels like you're getting somewhere!

How long are you staying near DF? When you go home, will your GP be liaising with them, or are you dealing with them directly?

So my incision has dehisced probably from the prednisone. Dana Farber has said that as soon as I return to Mayo it should be resutured. I called Mayo, who of course, has stated nothing needs to be done and they won't do anything. Go to the ER here? It is not an EMERGENCY now per say...but it is a risk for infection and opening up further...go now to prevent...or wait and see what happens and go once it gets worse if it gets worse?

Laura

Go now to the ER as it is an urgent issue IMO. You are immunocompromised with an unpredictable platelet count.

You can't afford to get the wound infected.

Laura,

What a relief to hear that someone is finally listening and trying to resolve whatever is going on with you. I simply don't understand Mayo's reactions. DF sounds great and the plan well thought out. I agree that you should get the sutures now rather than later; very important that you don't risk infection or bleeding at this point.

Sending lots of healing thoughts your way. I think of you often.

Take care.

Hugs,
Karen

Thank you...Deep down I knew I should go but my care back home has interrupted my ability to push myself at times...I feel at times I have been reprimanded in my care because I stand up for my health care...I am fearful the response I will receive when I return but I cant worry about that...I feel asleep...thanks narcotics :-) and woke up not long ago...at ER waiting to be seen now...
according to Mayo they NEVER seen wounds in the area get infected no matter what..."insert eye roll"...and I did stress the prednisone/plt factor...
Laura

Thanks Karen I think of you often as well. I hope you are well. I hope you have some summer plans..u deserve them. How is your status with things? Laura

2nd birthday today
 

This is really quick as I am so tired and want to head to bed.

But I had to stop and say that today is two years post transplant for me. This day two years ago, I received my transplant. I never dreamed I would be fighting for health two years later...but at least I am "stable" and it is nothing serious...I am so grateful to my donor...who I must wait five years before we can even sign papers to know each other (3 to go)...I praise God for her every day for if it wasn't for her I probably wouldn't be here today.

We went over to Lexington and Concord and saw a bunch of historical sites in regards to the revolution. We stopped at the Colonial Inn in Concord and ate. It was a place original to the Revolutionary War. It was good and fun. But now off to bed...a health update soon to come!

Will try and post a picture...Laura

6/18

P.S.
My PLTS have risen to 95..probably bc of Prednisone...so we will see what happens as I can't take Prednisone for ever...

Happy Birthday, Laura!

Transplant birthdays are good days for reflection and also milestones to celebrate. You've had a lot of ups and downs over a lot of years so it's great to hear about your mini-vacation. You're a good example for other patients of how to take care of yourself and keep on living your life too.

Happy birthday, Laura! Sorry I'm a day late - just didn't get logged in yesterday. Platelets close go 100 sounds very good. We are taking the summer a day at a time. I thought I was off the antinausea drugs but that lasted about two days. We have to keep reminding ourselves that the healing is not a linear progression but a seies of zigzags. I am slowly getting better and so grateful daily that I take hardly any medications and my issues are trivial compared to most. Eating continues to be the big hurdle. Luckily, I can still lose a lot of weight before I need to start worrying about wasting away. I make myself eat even though it is very rare for anything to taste good.

Thanks Karen :)

I am sorry about the antinausea medications....u know what the kicker antinausea medication was for me that worked really good? I got switched to 8 mg Zofran sublingual...sounds interesting that something so simple could work so good? Regular Zofran didn't do much...but the sublingual was the hit with me. I feel if I take it at first sign of nausea and don't wait, it catches it and I feel okay. That is the only thing I have to be careful of, taking Zofran right away and not trying to toughen it out before it gets too bad to work.I hear you about the eating...I make myself eat even though I never feel hungry and it just makes me feel sick...but I know I have to eat so I force myself to...I hope it can get better soon for you and me both!!!

Take care!!! Laura

Thanks Neil, such nice words from you :) I appreciate it!

I also should have thanked this forum greatly too!! Can I blame it on tiredness? However, I am so thankful for this site and the people here. I honestly don't think I could have made it through with so much strength if it wasn't for all the wonderful support of you people!!! Thank you, I am so thankful for your friendships!

Laura

Hi Melissa!

How have you been? Your anniversary is coming up here soon too!! Summer plans? Plans for anniversary?

I agree! Just the thought is a total relief. How are the hormone/gyn issues going now? Better, I hope!

I am heading back on Wednesday, but I am willing to fly back and forth to be seen here. It is a interesting situation...I think it would have been a different issue if the low platelets hadn't been thrown in...I know my GP will totally help me, she is the most kind, compassionate doctor ever!! I think it will be a combination of her and me both. DF has been very vocal about how emailing the providers back and forth is just fine, so I will probably do that with them for now and return for a follow up once I get started on the list!

Oh that list of ideas!!!! How I yearn to get started on it!!!! But I can't until I can stop the narcotics...but because of the whole incision dehiscement, I know have increased pain and so I had to up back up on the narcotics. I can't wait to get off them so that I can get going on that list!!!!

I checked out my medications, a good majority of them have lactose and gluten, ugh!! The generics we might be able to work around....however, many of them are name brand and what do I do? DF very clearly stated not even in medications. I was thinking of emailing them and asking if I took Lactaid with the pills that contain lactose and that will counteract it, otherwise not sure what else to do. A few of them I need to take...

Laura

Hi Marlene,
Thanks for all the great ideas, as usual, you are a wealth of information!

Thankfully (well not really, but yes) my brother just got dx with Celiac disease about 6 months ago, so I am a little knowledgeable of all the hidden gluten...and I can always ask him :)

If you have a list of hidden items of lactose or gluten let me know...

Mayo has tons of pharmacies...I always go to the same one and they know me well. I call and they know me without me having to give my name :) I called and asked them about the medications and they looked them all up. The majority of my meds have lactose in them...generic we might we able to work around...the name brand obviously we can't...I was thinking that taking Lactaid with them would be okay? Going to email DF and ask!

Laura

Hi Nicole,

I agree, I like their plan a lot :) The funny thing is...the majority of it seems so simple...what the heck Mayo?...I try so hard to not say bad things...I am sorry if I am always so negative against them...

Yes, lets not go there with parvo/AA but I have to admitt, I am nervous about this...I did think the whole thing with the lupus too...but didn't want my mind to go there quite yet too! However, I always, always appreciate any and all of your ideas...you are right that is how we role :)

Thankfully my plts seem to be rising....95 at last count...no new signs of bleeding. But it's like what is the next step? Wean off and see what happens? I was told by Mayo on Monday that after I started the Prednisone, if my plts rose, they would quickly wean me off the the prednisone and "see what happens". But if we did that couldn't we ruin saving the graft if that really what it is? I think your theory about being on steroids so long and it was enough to keep things stable and now that I am off it...drop...I am going to ask about that and see what is said...will let you know!

Thank you as always...
Laura

How do u do multiple quotes again in one reply?

Laura

Linda, so sorry for such a late rreply!!! Thanks for such a kind message to me. Nothing has changed recently except stopping the budesonide completely. I am not a vegan but good thought!! I was told not to take probiotics but will look into again! Thanks again, Laura